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      Upgraded Sclero Forums!   05/18/2017

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ray

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14 posts in this topic

Hello All 

 

I was diagnosed with Morphea in about 2013.  Spent many years going back to the doctors saying something was wrong and eventually got diagnosed after having a mole removed from a dermatologist.  

 

Have patches on my back, front, legs and now sides of face but they don't really bother me,  I get periods of cramp in my legs and lately aches in my arms and elbows.

 

Have seen a specialist at Southend Hospital who is really caring and I have been referred to The Royal Free in London which I am dreading,  hate travelling to London but hey ho.

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Hi Ray,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering with Morphea, although it's a good thing that your Southend consultant has referred you to The Royal Free.They are extremely knowledgeable about all types of scleroderma, so you should get the best treatment available. UVA1 phototherapy is now the recommended first-line treatment for morphea, so it's possible that they might suggest this to you.

 

I'm a patient at the RF as well, and travel up to them from West Sussex; the journey is a bit of a bore (and expensive!) but worth it, as I do like to deal with consultants that know what they're doing, particularly with such a bizarre disease as scleroderma. I do hope you have a satisfactory outcome from your appointment; please do let us know how you get on.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,  Thanks for the reply Joelf,  I am hoping to drive to the hospital but understand there is a parking issue there.

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Hi Ray,

 

I must admit I've never driven to the Royal Free; it's many years since I drove in London and parking can be difficult around Hampstead. I always go there by train and underground to Belsize Park.

 

I also have to visit the Royal Brompton Hospital and use the train to get there as well; I walk from Victoria station to Sloane Square and then down the King's Road.

 

I tend to make a day of it, when I have each of the hospital visits.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Ray,

 

Welcome to Sclero Forums!  Royal Free is one of the very finest scleroderma centers in the entire world, so you will very likely receive outstanding care there. 

 

For questions specific to the UK (just like this thread), this UK subforum is perfect. 

 

For more general support and friendship, you may also post in our MAIN subforum, as well.

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Ray

 

I am too a patient at the Royal Free after recently being diagnosed with scleroderma!  The hospital is amazing and very knowledgeable.  I also use the train and underground (I travel from Lincolnshire) and it is the easiest way and relatively stress free!  As Joelf quite rightly says the nearest underground is Belsize Park and then a 10 minute walk to the RF!

 

I hope all goes well for you!

 

Best regards. 

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Hello,  Thank you both for your replies. 

 

I will let you know how I get on.

 

Ray

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Hello Ray

 

Welcome to the forums!

 

As a frequenter of the Free parking is virtually impossible rather than difficult. I have a blue badge and have had to park on double yellows around the hospital as even the disabled bays were full (what a shocker, the amount of able bodied in the spaces is actually the shocker) I was at the Free today for a day stay procedure, on the ward at 8 a.m. and there were spaces but as I say this is rare. Unless you've an appointment that early get the train.

 

You could drive and stay over, there's a travel inn/lodge place that gives you parking in its car park and is about 5-10 minutes walk from the hospital. The pub nearest the hospital does good food, big portion small price, at least it did in 2007/2008!

 

I commend your rheumatologist for referring you themselves, not all are that helpful. Jo is correct about UVA-1 as the first line treatment unfortunately there are not many places in the UK provide it, I have never even heard it mentioned at the Royal Free and I have been a patient for 8 years. I have morphea, bullous morphea and diffuse systemic scleroderma.

 

Let us know how you get on at hospital and keep posting.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Amanda and thanks for the message,  I will be driving and am going to park at the Premier Inn.  Hopefully :) 

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Hello Ray

 

Excuse me for saying as we parked there years ago but make sure you have their "permission" to park there.

 

Hope all goes well and please let us know.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello All,

 

 Well managed to park 5 minutes walk away from Royal Free at a cost of £6 for 4 hours which for London is reasonable.  All the staff were very friendly but I do feel it was a waste of time. 

 

I was seen by a Spanish doctor who is /was being supervised,  he was very pleasant but it was the same old questions that I have been asked time and time again,  for some unknown reason my NHS details could not be found.

 

 I also saw the consultant Dr Ong  and a dermatologist.  They have decided to give me a different cream and I am to go back in 3 months.  

 

Personally a complete waste of a day but hey ho....

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Hi Ray,

 

Thanks for letting us have an update.

 

I'm sorry to hear that you didn't have a very good appointment at The Royal Free.

 

I always insist on seeing Prof. Denton or Dr. Ong, whom I've seen several times now and I usually find them very helpful (Dr Ong particularly, when I needed to chase up the hospital dealing with my hip replacement.) Having said that, by the time I was referred to the RF for scleroderma, I had already been treated for my lung involvement at The Royal Brompton, so was in the fortunate position of there not being a lot more that they could do at that time for me.

 

 " .........for some unknown reason my NHS details could not be found."

 

Yes well, why am I not surprised at that? Sadly, the NHS admin does leave a lot to be desired!  On my first appointment at the RF, they also had no details of the treatment I'd received at The Brompton, but fortunately I had taken the precaution of bringing all the relevant copies of my notes with me, so was able to produce them. I always take copies of my latest lung function tests, mainly to save time going over the same ground again and unfortunately all the hospitals I deal with are notorious for not liaising amongst themselves (the right hand seldom knows what the left is doing. :wink:)

 

On your next appointment in three months, I would suggest to them the possibility of having UVA1 phototherapy treatment. It is very important to be politely, but firmly, proactive with regards to your treatment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Joelf

 

Thanks for the reply and I will take your advice and ask for the UVA1 next time,  it was not possible this time as the person who does it was not available.  

 

Next Thursday I have an appointment to see my consultant rheumatologist at my local hospital and she is very good at listening and spends time with you.

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Hello Ray

 

Try and look at it this way...You were seen at a hospital expert in your disease. You were seen and prescribed treatment by doctors expert in your disease. The doctor is going to see you again. You were not additionally diagnosed with systemic scleroderma. All this expertise was free as in you did not have to pay then and there for it or what it actually cost. No one accidentally/negligently killed you and let's face it, these days, that's a plus!

 

Sometimes our expectations are unrealistic so disappointment becomes inevitable. There's very little that can be done for morphea apart from UVA1 but the UK centres providing it are few and far between.

 

Remember that you don't have to be a patient at the Royal Free but do try to take some positives from the visit, it's better for you if you can.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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